Terminally Ill Adults (End of Life) Bill

Catherine Fookes Excerpts

Friday 16th May 2025 Commons Chamber

[Dame Meg Hillier]

I must make progress.

I also want to talk about how the teenage brain works. The Bill would apply to a young person at the age of 18. A month or so after they reach that age, they could undertake an assisted death. Let me highlight some of the good conversations that I have had with people who have generously given their time to speak with me about these important issues, which I am worried have not been addressed at any point in the Bill’s passage, except for a short and important discussion in Committee.

[Catherine Fookes (Monmouthshire) (Lab)]

Will my hon. Friend give way?

[Dame Meg Hillier]

Let me finish my point about doctors’ advice before I move on to the issue of 18-year-olds. Dr Alexandra Mullock, who is a senior lecturer in medical law and co-director of the centre for social ethics and policy at the University of Manchester, said in written evidence to the Bill Committee:

“The freedom for a registered medical practitioner (RMP) to raise/discuss the option of seeking help to die in clause 4(2) is ethically problematic.”

She also highlighted:

“Professional advice regarding treatment will be received by the patient as a recommendation”,

as the hon. Member for Sleaford and North Hykeham (Dr Johnson) said. That is a really big concern. The UK coalition for deaf and disabled people is very concerned, and would like this provision removed as well.

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[Dame Meg Hillier]

I thank the hon. Lady for her comments. If I have time, I will touch on social media, but I want to put on the record my thanks to some of the professionals who gave of their time to speak to me in preparation for my amendment.

[Catherine Fookes]

Will my hon. Friend give way?

[Dame Meg Hillier]

Not at the moment.

I had some very interesting conversations with Sophie Scott, professor of cognitive neuroscience at University College London; Sallie Baxendale, professor of clinical neuropsychology at UCL; Sarah-Jayne Blakemore, professor of psychology and cognitive neuroscience at the University of Cambridge; Dr Richard Hain, consultant and clinical lead, all-Wales managed clinical network in paediatric palliative medicine at Cardiff and Vale university health board; and Dr Anna-Karenia Anderson, consultant in paediatric palliative medicine and medical director for Shooting Star children’s hospice. I am only sad that there has not been a bigger debate, because the process has not allowed for one. I apologise to them in advance that I will not be able to do justice in the time that I have to the very many careful and thoughtful points that they raised.

[Catherine Fookes]

Will my hon. Friend give way?

[Dame Meg Hillier]

I have said no—I need to explain the issues, and give due credit to the people who have assisted me in raising them.

Adolescents’ brains develop differently. From the age of puberty, there is a rapid change in how young people make decisions. As adults, we have the experience to imagine what the future might look like, but younger people, up to about the age of 25, often cannot plan or predict their future because that part of the brain has not developed well, and they are not good at understanding regret. The comparisons are different for adults. Role models and social groups matter a great deal.

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[Dame Meg Hillier]

I need to make some progress. Madam Deputy Speaker, I am trying to speak at great pace.

Teenagers are passionate about their beliefs and peers can change their minds in a way that their parents often cannot. There is not always a logical decision-making path. A doctor would carry weight. In response to the point made by the hon. Member for Edinburgh West (Christine Jardine), a child may be thinking about dying but somebody—that doctor or professional—could make their decision a legitimate option.

There are many issues in palliative care. We talked about Gillick competency, but to be clear, young people under the age of 18 can make their own decisions about healthcare. Even young people under the age of 16 can have such conversations because of Gillick competency, which is a good principle, but the issues around mental capacity and Gillick competency are often not well put in place—

[Catherine Fookes]

On that point, will my hon. Friend give way?

[Dame Meg Hillier]

I have said no to my hon. Friend—I have moved on from the points that she wanted to talk about.

The law is ambiguous about Gillick competency. The Mental Capacity Act 2005 and Gillick competency triangulates through the person but also the condition, so it relates to the complexity of the condition as well as to the individual. Peer pressure is a big part of what has an impact on people, as well as the view of the professional or doctor.

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[Dr Shastri-Hurst]

I will make a little progress, if I may.

In respect of new clause 2, those who have had the privilege of meeting a young person living with a terminal illness will know that they often display a maturity and a depth of understanding far beyond their years. To deny them the opportunity of a considered conversation about their future upon reaching adulthood is not an act of compassion, in my view; it is to abandon them. It is to leave them isolated, navigating a complex and deeply personal journey through the filter of online forums, rather than in dialogue with trusted, qualified professionals. We owe them better than that.

[Catherine Fookes]

My constituent Noah was diagnosed at 16 with an inoperable brain tumour, and he has said he would like the right to choose:

“The thought of being locked in unable to communicate is not how I want to spend the last months of my life. To end my life on my terms when the time comes would give me comfort.”

Noah does not want to be infantilised; he wants to be treated like the adult that he is. Does the hon. Gentleman not agree that the Bill will give him that protection?

[Dr Shastri-Hurst]

I am grateful to the hon. Lady for her intervention. That is a very powerful personal story from Noah, who I think reflects the maturity of many young people when dealing with these challenging issues.

By imposing, in effect, a statutory gag in this one area, new clauses 1 and 2 risk infantilising terminally ill patients, creating a chilling effect on communication at the very moment when clarity and compassion are most needed. If anything, new clauses 1 and 2 may result in harm to patients, forcing them to suffer in silence, unaware of lawful options simply because they do not know how to ask.

Finally, I turn to new clause 9, which presents a number of issues. In the first instance, subsection (1) would permit there to be, in effect, two different standards of proof. That must be legal nonsense. The boundaries of any legal test or hurdle must be clear. A failure to do so creates a great deal of uncertainty. Furthermore, the proposal to shift the standard of proof from the civil to the criminal, requiring panels to operate on the standard of beyond reasonable doubt, is deeply inappropriate. The balance of probabilities is the cornerstone of medical and civil decision making. To adopt a criminal threshold risks freezing the entire process, creating a very risk-averse system.